‘Perhaps I will die young.’ Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed methods study

PURPOSE: A cross-sectional national study was initiated in order to evaluate healthcare services and survivorship from the perspective of Danish adolescents and young adults (AYAs) with cancer. The purpose of the paper was to examine (Q1) to what extend Danish AYAs experienced fears and worries about dying; (Q2) with whom, if anyone, they had shared those worries; and finally, (Q3) how fears and worries influenced their daily life. The emphasis will be on Q3. METHODS: A 151-item questionnaire (including two closed- and one open-ended questions about fears of death and dying) was distributed among all 15-29-year-old Danes registered with a cancer diagnosis from 2009 to 2013. A total study population of 822 persons participated. Data was analyzed using a mixed design of descriptive statistics and qualitativecontent analysis. RESULTS: Q1: Almost 80 % of AYAs with cancer expressed some worries about death; hereof, more than half of them expressed quite a bit or very much. The analysis showed significant gender differences, whereas age and duration of disease did not have any significant impact on such thoughts. Q2: One third had not talked to anybody about his or her worries. Q3: The analysis resulted in three overall categories: fear of disease and death having little or no influence (n = 100), fear influencing in various ways (n = 215), and fear of disease and death having a substantial influence (n = 75). CONCLUSIONS: The majority of AYAs had experienced fears and worries about dying, but one third of them had not talked to anybody about those thoughts. It is an important clinical point that young age does not preclude fears and worries about dying in AYAs with cancer.